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CIS - THE CLINICALLY ISOLATED SYNDROME
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CIS - THE CLINICALLY ISOLATED SYNDROME

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CIS - the Clinically Isolated Syndrome

WHAT IS IT AND WHAT DOES IT MEAN?

With the growing evidence that the Disease Modifying Drugs are most useful in treating MS when they are used early in the course of the disease, there has been a flurry of research into what indications there might be to determine who is most at risk to develop Multiple Sclerosis.  Ideally we would like to be able to identify who really is at risk for MS when a patient shows up with suggestive symptoms.  The best way would be to have a blood test, that only MS patients had, but no one else had.  This would be called a "biomarker".  Unfortunately, despite intensive research, no suitable biomarker has yet been indentified.  We are left with trying to predict which patients who have early signs "suggestive of MS" will convert into "definite MS".  

Since RRMS (by far the most common kind) is characterized by symptoms and problems that occur in repeated attacks (Dissemination in Time) and by symptoms and problems that occur in different parts of the Central Nervous System, CNS (Dissemination in Space), our best bet is to look at those people who have only had their first attack.  This is a situation called a "Clinically Isolated Syndrome".  Waiting for a second attack may take many months or even many years.  We know from studies over the last 15 years that early treatment can help delay someone from having that second attack and getting those additional symptoms and problems that would make up the picture of full-blown MS?  How do we know which people with a CIS are most likely to "convert" from suspected MS to Definite MS?  Where can we look to make the best judgment so we can start treatment to prevent or substantially delay this conversion.

The diagnosis of MS requires that we find evidence that the disease has "acted up" on more than one occasion, more than 4 weeks apart.  This is called "Dissemination in Time".   This is what is missing in the person with CIS.  They have only had one attack.  This means that without further information we cannot make a diagnosis of MS.  The McDonald Criteria allows us to look at the MRI and, over time, find evidence that there is another attack on the central nervous system.  But, we want to predict as early as possible so we can treat and the MRI often does not yield enough information.   This is where the study data on CIS plays a role in predicting who will convert to MS.

Over the recent years, doctors and patients have used the term CIS to mean a variety of things - so much so that it has become a confusing term.  I found an comprehensive article published in the journal, Multiple Sclerosis, in 2008. (Mulitple Sclerosis 2008; 14: 1157-1174)  The method to explore this topic was to bring together 18 experts in the MS field from all over the world into a task force.  They met and worked on this in 2007.   They worked together to formulate some recommendations for the analysis and work up of a patient with CIS.  This group included some of the most well-known names in the field.  This was needed because the McDonlad Criteria - has not been the thorough diagnostic aid that some had hoped.  In fact, the Criteria have been most useful in "predicting" which patients who did not fulfill all the clinical requirements - of spread of the disease in time and space - were most likely to develop MS rather than being useful in "diagnosing people with MS."  In fact, many neurologists have misinterpreted the McDonald Criteria and misused it, as we have discussed so many times in the forum.


THE DEFINITION OF CIS

The task force felt that there were actually several "subtypes" or classes of CIS that had confused practitioners and that might have caused too much variability when they were lumped together in studies.  So, they proposed the following groups so that neurologists would have a clearer approach to diagnosis.

First they decided that the term CIS should ONLY  refer to the patient that had one, single attack of symptoms and signs that suggested an underlying inflammatory, demyelinating disease.  In general, this referred to the appearance of one or more symptoms which appeared fairly suddenly - over hours or days to maybe a week.  They defined the classes of CIS based on whether this first attack involved only one symptom, called "monofocal", such as an attack of optic neuritis without any other symptoms, whether there were two or more symptoms, called multifocal, like facial numbness and weakness of a limb, and whether there was associated MRI features consistent with demyelination.  They included one scenario, though, that had previously been ignored.  This was the patient who had no symptoms, or just very non-specific symptoms (like dizziness or headache), but somehow had MRI lesions found that suggested evidence of multifocal disease of a demyelinating type.  This means those people who have MRIs done for some other reason than looking for MS, like as a work up for headaches or after a head injury.

The Classes of CIS

First some definitions:

Mono = one

Focal = spot, place (monofocal - just one spot)

Multi = more than one (multifocal - more than one spot)

I     CIS - clinically monofocal, at least one asymptomatic MRI lesion.  This person has had one attack and has only one symptom suggestive of a demyelinating lesion in the CNS (for example hypereactive reflexes in one limb).  However, they also have at least one lesion on the MRI for which there is no correlating symptom.  That MRI lesion should be consistent with MS.

II     CIS - clinically multifocal, at least one asymptomatic MRI lesion.  This patient had had just one attack, but has indications that there are more than one demyelinating lesion in the CNS.  An example of this might be optic neuritis and L'Hermitte's Sign.  On the MRI there should be at least one lesion that doesn't have a corresponding lesion, ie. at least one asymptomatic MRI lesion.  The MRI lesion(s) should be consistent with MS or demyelination.

III    CIS - clinically monofocal, MRI may appear normal; no asymptomatic MRI lesions  This patient has had just the one appearance of a single symptom, like pain on eye movement with visual disturbance, and their MRI is normal; there is no asymptomatic MRI lesion.  Approximately one third (1/3) of all patients with CIS will have a normal baseline MRI.

IV    CIS - clinically multipfocal, MRI may appear normal; no asymptomatic MRI lesions  This patient has more than one symptom, for example facial numbness and a urinary urgency of a neurolgical type.  The task group deems this a "rare" occurrence, but the article does not elaborate, stating that they believe this is a rare occurence.

V    CIS - no clinical presentation (no attack) to suggest demyelinating disease, but MRI is suggestive.  An MRI done for some other reason happens to show multiple lesions that are suggestive of demyelination.  But the patient has had no symptoms OR they have had very non-specific symptoms like fatigue, headaches or dizziness.

con't below
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WHAT ARE SOME OF THE COMMON SYMPTOMS IN A PERSON WITH CIS?

We all need to understand that not every symptom that occurs in MS will be included in the determination of CIS.  Some symptoms, though they are very common in MS, are just too non-specific.  What does non-secific mean?  It means that these symptoms could just as well occur in many, many other diseases and conditions.  Some examples of non-specific symptoms are spots of numbness or tingling, headaches, dizziness, fatigue and heat-intolerance.

Several experts in the field have put the different presentations of CIS into groupings.  The most common of these groupings are Visual Syndrome, Brainstem Syndromes, Spinal Syndromes and Cerebral Hemisphere Syndromes.  Below are examples of very common and less common symptoms that fall into each of the different types.  At the end of each description are symptoms that are rarely seen (but can be seen) and are signs to look scrupulously for another cause than MS.

1)   Visual Syndromes    Most commonly this is optic neuritis - Common characteristics are unilateral presentation - meaning that in the first attack the optic neuritis occurs just on one side, pain with eye movement, partially or mainly central visual blurring and normal optic disc or mild paleness.

The less common features, but still consistent with MS, are optic neuritis occuring simultaneously in both eyes, painless, no light perception, moderate to severe optic disc swelling with no hemorrhages, and uveitis which is usually mild and posterior.

Very atypical features would be progressive optic neuropathy, severe and continuous eye pain, other abnormalities seen on eye exam like lesions in the macula, and severe, anterior uveitis.

2)     Brainstem and Cerebellar Syndromes - Common things seen are BINO (Bilateral Internuclear Ophthalmoplegia), Ataxia and multidirectional nystagmus, Sixth Cranial Nerve Palsy, Facial Numbness.

Less often they see INO (unilateral), Facial (Bell's) Palsy, Facial Myokymia (writhing of facial muscles), Deafness or hearing loss, Trigeminal neuralgia, and paroxysmal tonic spasms.

Atypical are complete external ophthalmoplegia, vertical gaze palsies (unable to look up or down), third nerve palsies, Progressive trigeminal neuropathy (problems which progress to include all of the branches of the Trigeminal Nerve, torticollis (stiff, twisted neck), Focal dystonia.

3)     Spinal Cord Syndromes - The most common symptoms include partial myelopathy (incomplete tranverse myelitis), L'Hermitte's Syndrome, Deafferented hand (numbness in a glove-like distribution), areas of numbness, Urinary urgency, incontinence, erectile dysfunction, and progressive, asymmetrical, spastic paraplegia (progressive weakness of both legs with spasticity that is not identical on both sides).

Less commonly, but still consistent with MS, are complete tranverse myelitis, radiculopathy (like a pinched nerve in the back that follows the pathway of that nerve), segmental loss of pain and temperature sensation, fecal incontinence, partial Brown-Squard Syndrome, and progressive, spastic, paraplegia that progresses symmetrically.

Atypical CIS features would include Anterior-only spinal artery territory lesion, Cauda equina syndrome, Sharp sensory level to all modalities (touch, pain, vibration and temperature) with localized spinal pain, Complete Brown-Sequard Syndrome, Acute Urinary Retention, and progressive sensory ataxia.

4)     Cerebral Hemisphere Syndromes -  This would commonly include Mild subcortical cognitive impairment, and Hemiparesis (weakness of one side of the body.

Less common presentation would be epilepsy (first onset of seizures) and Hemianopia (loss of one side of the visual field)

Unusually these could be seen:  Encephalopathy (decrease in consciousness, confusion, drowsiness) and Cortical blindness (blindness that is caused by inability to process any visual information in the visual cortex of the brain - as opposed to a problem in the optic nerve).

Con't
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DO PEOPLE WITH CIS ACTUALLY HAVE MS?

Most articles skate around this, but patients ask it all the time.  This answer is my take on what I have read.   Since MS is defined as a disease marked by Dissemination of Disease in Time and Space, then "no" a person with CIS does NOT have MS.  And not all people who a diagnosed witn CIS will eventually show full-blown, and diagnoseable MS.  There are other Idiopathic Inflammatory Demyelinating Diseases.  And occasionally people will have a single episode of demyelination in complete isolation.


OKAY, SO WHAT ARE THE PREDICTIONS FOR A PERSON WITH CIS?  WHO IS LIKE TO MOVE ON TO DEFINITE MS?

It turns out that the most important thing that determines what the risk is for a person with CIS to convert to MS is the number of lesions on the first - called the "baseline" - MRI.  Listening to our neurologists, one might think that the more lesions the higher the risk of converting to MS, but this is not true.  A SINGLE MRI lesion, if it is "consistent with" MS, is enough to raise the likelihood of later showing all the needed findings of MS.  Now look at the graphic at the top of this post.  It is a bar graph that plots the number of lesions against the risk of converting to Definite MS at 7, 14 and 20 years.

The lesions are broken down into three groups.  The first group is called LOW RISK is the one with a normal MRI.  The graph shows that this group has about a 10% risk of converting to MS at 7 years after first attack, and this increases to a 20% chance by 14 years and beyond.

The next group is the MODERATE RISK group.  Moderate risk is defined as having 1 to 3 MRI lesions on the first baseline MRI.  The graph here shows something quite startling.  At 7 years after the diagnosis of CIS, the person has a 40% chance of converting to definite MS.  BUT, by 14yrs and 20 yrs, the risk has jumped to an astounding 90%.  Too, often we have heard neurologists calm their patients by assuring them that, with just a few lesions, their risk of developing MS is quite low.  What we haven't heard before is that the risk jumps enormously if you look outwards to 14 years.  I have read some data that shows that a single lesion has just slightly a lower risk than this, but not enough to seriously lower the risk of conversion.

HIGH RISK - this is the group with 4 or more lesions on the MRI at first clinical attack.  Here the short term risk is higher - close to 80%.  But the long term risk is no greater, it is still in the 80% to 90% range.

This data is presented fairly frequently in different articles and professional presentations.  I feel it is a little misleading in the way the risk groups are labeled.  The Low risk group, those with a normal MRI is clearly at lower risk to develop MS, that is, 20% long term.  But, note that the risk is NOT ZERO!  Too many of the people on this forum have been told that a normal MRI at any point in their work up positively excluded MS - even in the future.  Twenty percent is a lower risk, but it is still 1 in 5 and that is substantial.

For those people who have consistent lesions of any number, I believe they should be informed that the long term risk for ultimately showing signs that will put them in the Definite MS category is close to 90% by 14 years after presentation.  For most people, the knowledge that there is a close to 90% chance of their future having MS would be very important, both to planning their life and to deciding how important it might be to treat early.


OTHER FACTORS THAT CONTRIBUTE TO RISK OF DEVELOPING MS

There are other factors that contribute to raise a person's risk of converting to Definite MS.  I have not found the studies that give absolute numbers to all of these.

The most important is the presence of Optic Neuritis.

Positive results on the auxillary testing for MS also raises the risk for conversion like

Finding of 2 or more unique Oligoclonal Bands in the CSF,

An elevated IgG Index (though O-Bands are considered "better" evidence than the Index.)  

Also raising the risk would be positive results in the Evoked Potential testing with VEP being the most important, followed by SSEP, and then the BAER.

A positive family history of MS would also weigh postively toward the risk of conversion, though likely not by a strong margin in addition to meeting other of the most common parameters of the group of people most likely to have MS, being young and female.


THE DECISION TO TREAT WITH A DISEASE MODIFYING DRUG

The decision to treat a CIS is left to the descretion of the treating neurologist according to the Academy of Neurology.  Not treating and following the patient over time is as aceptable as placing them on a DMD.  However, the MS organizations, like the Consortium of MS Centers lean far more toward treating the CIS in an attempt to catch the earliest window to slow what would likely be to treat the groups in the 80% -90% risk.  I believe that an educated patient population can add our voices to this decision.  But, our neurologists and we need to have the facts and understand our true risk.

Some MS researchers believe that the compelling factor to treat should not be just the risk of conversion to Definite MS, but should include the risk of progression of disability.  In a process similar to calculating the risk of MS Conversion we have data on the number of MRI lesions at baseline that raise the risk of more aggressive progression to a diabled status.   Of note here is that 4 - 9 lesions at baseline has an elevated risk of having an EDSS of equal to or greater than 3 at 5 years after presentation.  The greatest risk is with 10 or more lesions on the MRI at baseline.

The article from which this study was taken can be found at

http://msj.sagepub.com/cgi/content/abstract/14/9/1157

Quix
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sorry that was really long.....sometime I will try to write up the short version.  sorry  :((
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CIS - THE SHORT ANSWER

To diagnose RRMS a person must have a disease process that shows that it has spread out in time (this translates to more than one attack) and that it has spread out in space (this translates to damage in separate parts of the nervous system.  All better reasons for the symptoms and signs must be ruled out - this means ruling out the MS Mimics.

A person with CIS - Clinically Isolated Syndrome - has had only one attack of symptoms that are suggestive of a demyelinating disease.  MS is the most common demyelinating disease.  To have a CIS you can have just one symptom or more than one.  If you have just one you don't have evidence that the disease has spread out in space nor in time.  If you have multiple symptoms you may have satisfied the requirement for spread in space.

Identifying the CIS is important so that we can identify the people who are at very high risk (around 90% or so) to go on to develop full blown MS before they do.  that way we can begin DMD treatment to try to delay the conversion to definite MS.

The appearance of the MRI at the time of the CIS (first attack) is important because the MRI can tell us a lot about the risk of developing MS.

NOW LOOK AT THE PICTURE OF THE GRAPH AT THE TOP OF THIS POST

Basically if you have CIS and no lesions (a normal MRI) you have a 10% risk of going on to MS in the next 7 years.  In the next 14 years your risk rises to about 20%.

If you have 1-3 MRI lesions and a CIS your risk is about 40% to MS in 7 years.  But, it jumps astronomically to about 90% chance of full blown MS by 14 and 20 years.

If you have more than 4 lesions on baseline MRI along with CIS, then you have a 85%-90% chance of progressing period.

SO - your long term risk of developing MS rises from 20% to 90% just by going from a normal MRI to having just one lesion!!!  Big news, eh?

Other things that raise your risk of moving from CIS to definite MS are Optic Neuritis and positive results on the LP and Evoked Potentials.

You need to know that officially it is okay to hold treatment for a CIS (with any MRI picture) and wait for a person to fulfill all of the diagnostic requirements for MS.  Many groups, like the Consortium of MS Centers pushes for early treatment of all CIS with 1 or more lesions to try to push off converting into the future.

This is CIS in a nutshell.

Quix
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thoroughly good read and good information.

it is relative to me, as that one paper you saw, where a doctor stated where CIS patients can alter their prognosis favorably via DMD/ABC treatment, but this patient doesn't have CIS"  or something like that.  no reason to take space up here with that, you know the silliness of that report and his CIS statement.

this is really good education for the doctors and patients though. hopefully to help the doctors with their diagnositc procedures with demyelinating diseases and to arm patients with better insight to action courses, as you stated.

another keeper ...
many thanks
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Well Q, once again you knocked it out of the ballpark.  It may be lengthy, but there is not a wasted word in your text.  

This is a very important piece for all of our members who demonstrate CIS, but can't get treatment .... if only some of this were much less complicated and diagnosis process were straight forward.  

One note to everyone - the graphic Q has used at the very top can be enlarged with a double click on the picture.  The graph is an essential piece to understanding CIS and why we want to see all of you treated if deemed appropriate.

be well,
Lulu
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Thank you for this!  It is great to have it all explained in one place!  This should definitely be a HP!  Since my MS neuro believes that I have CIS at this point, all of this is very important information to think about - and to discuss with my neuro at my next appointment.

Thank you for all you do for us here.

Hugs,
Chrisy
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To: Quix

Makes great reading and shall help me understand this complex neurological process.
I cant wait for my next neuro appointment I will be able to educate this man to come out of the box!

The time scale is the most educating pce of info incredible that the Neuro dont ever mention the increase in persentage has the 7/ and 14th/ yr pass, Our chances of going onto develope MS increase significantly.


As usual Quix I am blown away with your knack of discriptive knoledge.

Many thanks tarter
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What marks the conversion form CIS to Definite MS?

I left this out.

Two things can tip the scales from CIS to MS.

The first is a second clinical "attack."  Remember that a CIS is a person that has had only one attack.  In people who's CIS was "monofocal" - that is they only showed evidence of damage in one area of the nervous system, the second attack whould be with symptoms or signs that indicate a new area of the cnetral nervous system had been hit.

The second thing is sufficient changes on the MRI.  The McDonald Criteria lists the kind and number of new lesions that can be used to "stand in" for this second attack.

Ideally, a person with a CIS would be on treatment with a DMD and this would take a long time to show up!!

Quix
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Though the information you provided is NOT good news for me, I greatly appreciate your efforts to convey this complex topic in layperson's terms. I was recently diagnosed with CIS and the MRI reveals one periventricular lesion. All of my evoked potentials & eye blink test were normal and my neurological examination was mostly unremarkable (my presenting symptom was partial numbness on the left side of my body). However, CSF lab results reveal that, unfortunately, I am positive for oligoclonal bands. My neurologist suggested that since I had chicken pocks at age 25 (I am now 39), oligoclonal bands can present, but he said that only in rare cases would they persist for this many years. So based on the information you provided it looks like I've got almost a 100% chance of developing MS. It is frustrating that my neurologist told me that I had a 30-40% lifetime chance of developing MS. I will definitely discuss this information with him.

Quixotic, I was wondering where you got the graph you posted above? I would like to look at the article at bring a copy to my neurologist. I did look at the article that you posted and if was very informative. Also, could you post which articles you got information from that mention a lower likelihood of developing disability when there is only one or perhaps very few MRI lesions at baseline? Additionally, if you could post a bibliography of any articles you found helpful I would be grateful.

Thanks again,
ScaredyCat2010
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Such important information!  Truly, thank you for taking the time to compile and share it with us.  It is unbelievably helpful.

My question has to do with the definition of a lesion that is "consistent with MS".  I now have a CIS diagnosis with about 10 nonspecific lesions.  Most are "punctate," but I have 2 larger ones.  I think they are in areas that aren't as typical for MS.  So, while MS is in my differential diagnosis, so are some other things like migraines.  In these studies on CIS, what is considered a lesion "consistent with MS"?  Does it have to do with size, location, etc.?  

I am in the process of considering DMDs for CIS and want to have all the information I can.  I don't have a good relapsing-remitting pattern, but rather random, minor symptoms that come and go (for example, a re-occurring tingling patch on the bottom of my foot that sticks around for a couple of days at a time).  I do have a family history of MS.  Oh, and I should add that my MRIs and symptoms are virtually stable for the past 7 years (my second opinion neuro *did* think she saw some change, which is why she pushed me into the CIS category).  So, I guess at least I am not in that 80% of the high risk group who develop MS after 7 years?

So, I am trying to figure out if I *am* in that high-risk category on the chart or not - I have the quantity of lesions, but I am wondering how to tell if they qualify to be counted.  

Thanks!!
Laurel
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Shoot!#%#$#%

My JEG file with the image abovew did not include the three references from which this graph was made.  'My bad!

The data for the "Risk to Conversion" and the "Risk to Disability" I got from a lecture by Dr. Timothy Vollner of the Denver MS Center.  It was published online by Peerview Press in a continuing education activity.  Here is the reference for that lecture.  If you want to watch the podcast you need to disable any pop-up blocker.  You can also download the transcript (close the podcast window) into a .pdf file.  the transcript will give you many of the references.

http://www.peerviewpress.com/selecting-immunomodulating-therapy-relapsing-remitting-multiple-sclerosis


There are two slides, #'s 7 and 8 (though I am not sure of this).  the first is the bar graph above.

Here are the references for this slide.  Many slides have their own references.

Tintore M et al.  Neurology. 2006; 67:968-972.

Brex PA et al. N Engl J Med. 2002:346:158-162

Fisniku LK et al. Brain. 2008;138:808-817

The second slide is the one that shows disability status as measured by the EDSS compared to lesions at baseline.  The only reference for this one is

Tintore M et al.  Neurology. 2006; 67:968-972.


In the future I will take care to print the link or the reference cite for what I say.

SCat - Generally (if I remember correctly) a brain infection (like a meningoencepahlitis) would cause just one O-Band.  And these typically do fade with time (a few years).  so, I agree with your neuro that it would be really hard to account for your O-Bands on that basis.  And your episode of partial left-sided numbness is VERY consistent with a demyelinating attack.

Laurel - I have never read an exact definition of what it means to have a lesion which is "consistent" with MS.  However, from my professional work, it would mean a lesion that could be seen in MS.  The question one would ask is, "Would it be reasonably common to see a lesion in this spot in a person with MS?"  Many neuros would say it has to be "classic."  I disagree that the use of the word "consistent with" would have to be so strict in interpretation.

So, lesions in the periventricular region, the subcortical region, the corpus callosum, the cerebellum, the brrainstem and the spine would all be examples of lesions that are consistent with MS - and probably a few others.  But lesions in the meninges, lesions that are clearly infarctions, in the dentate nuclei, if all lesions enhanced simultaneously, infiltrating lesions (without a clear border and extending into the adjacent brain matter) - These would not be consistent with MS.

Then, very punctate (pinpoint) lesions could be considered not as consistent with MS and many docs would require that they be at least 3mm in size.  Remember we are talking about 1 or 2 being enough.  Seven years is a long time.  We can hope that you escaped.  However, MS can be so mild as to only cause minor sensory symptoms, just as you describe with the numb patch.  Since you have had those, I would say you may, indeed, have MS.

We are 7 years in and your course is still very mild.  I have read some sources that say that mildness at 10 to 15 years is "highly indicative" that the course will remain mild.  the problem is that it is not a guarantee.

I have posted studies before that show that 20 years into the illness, 30% of people deemed "benign MS" will require assistance to walk, some number near that will have noticeable cognitive problems and about 12% will have significant cognitive problems.  For this reason, I am deeply adverse to ever calling MS "benign."  (I would have to go back and find those references - which I will, if asked.  Sadly, my organizational skills have gone the way of the dodo bird.))


Quix
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Thanks so much for posting all this and explaining it!  I already have printed this off to take into my next neuro appointment as a case for treating my CIS now based on my risk factors.
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Your neuro might want to see these two articles:

http://msj.sagepub.com/cgi/content/abstract/14/9/1157

and

http://www.peerviewpress.com/selecting-immunomodulating-therapy-relapsing-remitting-multiple-sclerosis

The second one is the one with the graph.
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Quixotic, thanks so much for posting those great sources. I will definitely discuss these with my neurologist.

Do you know by any chance how CIS is distinguished from Lyme disease?

Thanks,
ScaredyCat2010
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Quixotic, I am having some trouble understand the Barkhof criteria even after reading this article: http://brain.oxfordjournals.org/cgi/content/short/120/11/2059

Do you know where I can find more information on this?

SCat
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This was very interesting reading.

I have read up a lot on CIS and risk of conversion to clinical MS but this is definitely the most detailed information I have read and the easiest to understand.

It also puts me at higher risk than I thought (I am diagnosed with CIS with 4 lesions, 2 on my brain and 2 on my spine), but I like to keep informed and up to date so I have some idea of what to expect.

As I am in the UK DMD's are not an option for me but I am generally fit and well, only very minor problems so far.

For me it is 3 years since my initial attack (severe paresthesia around the spine). Although I have had other small problems that might have been considered a relapse, they were not typical and no change on MRI so there was nothing that would give me a diagnosis of MS. So its the waiting game as it is for many people.
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That was really interesting.

How do neurologists consider attacks that a patient had before coming into their care? As in, would I have to come to the neurologist when I'm having symptoms, wait for them to go away, and then return the next time I have symptoms in order to get a definite diagnosis? Or could they consider the numerous episodes that I've had in the past, and the symptoms that I'm having at present, and use that to determine dissemination in time? (I don't know if that makes sense - but I'll try to clarify if you want me to!) Would they likely diagnose me with CIS because this is the first episode that they're seeing, or just trust me when I tell them about the many previous times that I've had symptoms?
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bump
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Thanks moki b

       Mike
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by dragon_flies, Jan 10, 2010 02:26PM
That was really interesting.

How do neurologists consider attacks that a patient had before coming into their care? As in, would I have to come to the neurologist when I'm having symptoms, wait for them to go away, and then return the next time I have symptoms in order to get a definite diagnosis? Or could they consider the numerous episodes that I've had in the past, and the symptoms that I'm having at present, and use that to determine dissemination in time? (I don't know if that makes sense - but I'll try to clarify if you want me to!) Would they likely diagnose me with CIS because this is the first episode that they're seeing, or just trust me when I tell them about the many previous times that I've had symptoms?


dragon_flies, that's a really good question.  I have often wondered about this.  Anyone?
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Quix

This is a great article. Thanks very much for taking the time and effort to explain all this.

I'm feeling really sad though. Most of my sx, if not all, are in the criteria and lists. With multiple episodes over many years. You could say I've had chronic CIS! LOL Sx are, of course, progressing.

All but a couple of doctors have ever taken my sx seriously. Tests have been grudgingly done  - mostly the wrong ones (like, substituting a chest xray for a planned lumbar puncture when there are absolutely no indications of thoracic disease and multiple cns sx!). Most docs have dismissed, some have been downright rude.

It took a new, young female doc to insist on xrays/scans. The first of which has shown...as I knew all along...significant vertebral disease with other 'abnormalities that indicate need for further scans (always a bit concerning when radiological reports are terse and hastily refer you for more scans in capital letters!!).

My point is that my sx haven't demoralised me, they need not have disabled me. What has totally demoralised and disabled me is the arrogant, dismissive attitude of doctors.

But this is general in the UK, I think they are taught at med school that F pts are nasty, mysterious creatures who spend their whole lives ruminating on getting some disease or other so they deserve nothing but the worst!

Hugs
sammxx



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I have 8 brain lesions and 1 spinal lesion. I started with headache and ear pain. Now I still have daily headache 6mths later. Vibrating in my hip, Hip pain, Numb heel, Weakness on my right side. Neuritis in my left eye 3 times in as many months, Dizziness, Fatigue, My feet feel as if they are being crushed when standing. It stinks but I know alot of people have it worse than me so I should not complain. I appreciate all the knowledge you give us. I want you for my neuro;-)
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HI all,

I read every bit of this article and found it really interesting even though most of it has whooshed over my head now and I cannot remember the specifics.

What I would be interested in knowing is the size of lesions over time. Let us say for example someone had a CIS 8 to 10 years ago how big would their lesion be on their MRI today?  Are we talking tiny or bigger?  Or is this one of those things which is different for every person?
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Thanks for the information... I have to admit with the cognative issues I have I could not tell you any of what I read :)  But... I do remember thinking what a great bunch of information as I was reading it.  Thank you for all the time and effort you put into educating us.  I haven't been on in a long time but as weather gets colder and my parents head south I will engage more and more.  Stay well and Thank you again for all you time and hard work :)
Debbie
~live as if all your dreams came true~
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This is an amazing amount of information.  Thank you so much, Quix!!!
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I have a question for you Quix. I had what I believe was optic neuritis in 2003. I went to an ophthalmologist and to the ER and neither place diagnosed me. Both places said they didn't know what it was because nothing showed up on physical exam nor on CAT scan. I do however have a CAT scan from 2003 that was performed for eye pain.

I saw a neurologist about two days after my ER visit because I had developed severe vertigo and lost the hearing in one ear. I was in such bad shape physically and mentally that I didn't mention the eye pain that I had to him, at least I don't remember mentioning it. I was so focused on my vertigo and was so scared about the hearing loss that those two things were all I could focus on. The entire back side of my body went numb also and I don't believe that was entered into my history but that was the neuro's doing. I told him about it but he told me he had no idea what that could have been and wrote nothing on my chart.

My question is this...since I didn't receive an actual diagnosis of optic neuritis and my numbness was not entered into my chart does that mean that I now have no way of having those entered into my medical history? How does that work?

I ask because I believe I experienced a CIS at that time.

Thank you for any time you can give to my question.

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DocQ:
You are amazing!
Thanks for such great info.
TimC
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Bump for all the people who are asking about Clinically Isolated Syndrome.

Quix
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I actually asked my neuro about this today. He told me not to believe everything I read. I told him I dont read trash! I read FACTS!! He is not ready to commit to MS. Just told me he feels 85% sure MS. He said do these 3 days of steriod infusion and lets see how you feel. You are going to feel better than you have in 5 years!! Ok, great, then what??????????
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Very nicely done. As always, excellent info. I guess mine falls into the rare type 4 category. But I think that's because I had many mild episodes over the years that went unreported and undetected. I didn't report any of it to an MD until it was in-your-face obvious. By that time, many things had accumulated.
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Your neuro is right.  There is a lot of trsh about everything on the internet and the normal person hardly knows how to evaluate the data.  I chose this info because it is from a podcast by Dr. Timothy Vollner, and he is an accepted major authority on the subject.  He authors a great deal of articles and studies and is qidely quoted by other experts.  He is frequently on panels that decide the type of thing that we are discussing here.  I present it to the forum, because it is NOT trash.  (Don't worry I am not offended, merely trying to reasuure people that I don't post info that is not well founded in science.)

I will say that the data that I show here is not accepted by everyone.  So be it.  Some doctors either are not aware of this data or they are not comfortable being so "liberal" in applying well-known criteria to their patients.

In the eyes of the experts that I respect being 85% sure of the diagnosis of MS is completely sufficient to give a DMD, as shown by the data above.

Quix
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oops, typo - Dr. Timothy Vollmer

Herre is the script for the entire lecture with the slides:

http://peerviewpress.com/files/programs/6212/printtranscript/6212.pdf

You can search for articles by Dr. Vollmer and see that he is right there at the top of what is being taught about MS, CIS and MS treatments.

Quix
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After this long knowing me, he (my dr) knows I have never presented anything to him that is just off the wall.......I trust you Quix, and I know you would not post if you didnt believe. Thank you for not be offended. Was not my intent. Drs should know we are going to educate ourselves about something that we may have. Especially something like MS, that is not that well known.
Thank you for acknowledging that 85% is sufficent for DMD. I am going to do these three days of  steriod infusions and get back with him on the 19th. See what he says and if I am not comfortable, I will seek MS specialist.

Again, Thank you

Beth
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My doctor just recently told me I have CIS because of my right side of face and left side of body is numb like its always frozen from going to the dentist. I have to use a walker to be able to walk and have to learn so many things now. He found a lesion at the base of my brain and the seconds MRI showed it swelled. He  put me on prednisone and is slowly trying to wean me off it.
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I'm at a loss where I am --- I feel like I fell through some cracks with poor medical care and think I am CIS x three (with 2 undocumented attacks) despite no-one saying so. All I do have are scattered abnormalities on my clinicals, reduced amplitude on VEP and abnormal waveforms, and one lesion in the perventricular region that the radiologist missed but my MS specialist indicated it's "something." lol ~

I have a good doctor right now but it's a waiting game. She's giving me her plan. At the moment, I'm a little concerned with my right hand/arm, it seems to be developing quite the weakness as typing and holding/lifting are become more troublesome. I have a SSEP scheduled soon. I think that should show my right foot/right hand issues if it's a spinal lesion. I think?  

I see a Neuro-Ophth to try to figure our my widespread vision issues and unexplainable long term ON symptoms without latency. I am wondering if it was right eye weakness (INO) that was causing the pain on movement and some of the double vision. In my research though, that doesn't explain the constant double vision in both eyes (singularly.) I have color variances between both eys and a scotoma in my left eye where there is a little black dot but also an area where black typing looks saturated. I also have had documented nystagmus.

The other test is for hearing fluctuations and tinnitis that developed in June....then repeat MRI's late this year. Hopefully something leads in the right direction for treatment soon. Should I ask her about CIS at my next appointment? Is that out of line?
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These figures that you are quoting of 90% come mainly from weak studies that do not fall into class i evidence! The table of the 7, 14, and 20 year follow up that you are showing had a narrow spectrum of persons with the suspected condition, many of whom were lost to follow up.

Also the baseline scans were made on very old and low resolution mri, with a 10 mm slice thickness, therefore probably overestimating the amount of lesions by today's standards, not to mention a host of other limitations.


Studies like these are not sufficient to be representative of the population and it is for this reason that any good neurologist will not quote such figures to their patient.

In any case the problem, as always is how to individualize the suspected risk and many of these studies may categorize ADEM and CIS differently, and therefore not give the true prognostic picture of a single demyelinating event.
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